First, as politely as possible, if someone wants to debunk what we experience, they should give good references, otherwise, it turns this into a Rush Limbough diatribe. Wine gives me celiac reactions. I am not allergic to grapes. There IS research showing there is gluten in wine, so where is the MYTH? Cut it out! This section of the forum is for super sensitives. I am sure each of us wishes we were not, but we are. Figuring out all the "little" things that make us ill is imperative. I have learned so much from everyone and am getting sick rarely any more.
An example: I am visiting grandkids and they eat sandwishes with wheat. Often in the past I would get ill even though I stayed on my diet and cooked in my own spot. But, I found out here it was the kissing. Amazing, and who would have thought?

I thought that this super sensitive section was for those of us who are not in that 99.9999 percent?

First, I admit that I almost never look at the forum topics are in so I didn't realize I was in the super sensitive area. My mistake.

However, new folks make the same mistake and some stumble onto these threads and freak out thinking they'll never be able to again eat something as basic as vegetables. Almost 11 years ago I flipped out reading all the warnings about things that we now know there was really no need to worry about. On occasion, I think it does no harm to point out that your average celiac does NOT have to do things like tracking down how farmers grow and harvest their crops.

I think the vast majority of wines made do not use any form of gluten in the processing of them so this article does not represent most of the wine making world. Trust me, I drink wine every single day and am an extremely sensitive celiac who nearly died from this disease and have yet to ever become ill from drinking red wine. I do drink wine from specific countries and vineyards so maybe that has something to do with it but I doubt it is just luck that is at play here. I have also visited vineyards (because you get free samples!) and none of them had heard of this practice when I questioned them about whether red wine was truly safe. I did my homework so think this is not standard practice.

I personally think that those who label themselves super sensitives to the point discussed here are people who have many food sensitivities and intolerances and react to many different things. I have reacted to foods and then not reacted to foods. I have reacted to foods with absolutely no gluten in them whatsoever and know it was from another sensitivity I had developed.You have no way of proving that you are reacting to cc or actual gluten contamination in the food because you can only test down to a certain level. Symptoms from one intolerance can mimic those of another. This may be the super sensitive category but I would venture to guess most new celiacs read this and it would be downright wrong to give them the impression that celiacs have to worry about things which do not contain gluten but someone has them convinced a coating on it may be contaminated or not to drink red wine because it contains gluten. Alcohol is very irritating to the GI tract and those who do not heal well or have a myriad of food issues may not be able to tolerate it ever....doesn't mean it is gluten contaminated at all. With the amount of red wine I drink it would definitely trip my repeat blood work at some point and I would never be showing the consistently low, low numbers I have when tested. As I am extremely serio-sensitive with regards to immunity issues, I consider that more scientific than someone saying they reacted so it must be the gluten in the wine!

I totally believe those here are reacting to something in their foods and some Celiacs get the poop end of the stick and have to cut out many foods that most sensitive Celiacs do not. That just does not mean everything is so contaminated with low levels of gluten. I believe it does happen for sure in some batches and products but for the most part, if food were that cc'd or contaminated, the vast majority of celiacs would not be healing and get well. Don't forget....just because you have a reaction and others don't, it doesn't mean they get to eat it and you can't because you're so sensitive. I have met celiacs who have zero symptoms, other than unexplained anemia, and they had no villi left...none. So we all have to be careful of gluten ingestion the same way but we also have to learn where the real dangers lie and not become fearful of the food supply.

First, I admit that I almost never look at the forum topics are in so I didn't realize I was in the super sensitive area. My mistake.

However, new folks make the same mistake and some stumble onto these threads and freak out thinking they'll never be able to again eat something as basic as vegetables. Almost 11 years ago I flipped out reading all the warnings about things that we now know there was really no need to worry about. On occasion, I think it does no harm to point out that your average celiac does NOT have to do things like tracking down how farmers grow and harvest their crops.

richard

Thank you for explaining that.

I agree with you. Maybe we need to put more cautions into the body of these posts that we are talking about issues for super sensitive celiacs.

I'll tell you what happened to me so you can see it from my side. I didn't get better so I came here. I had all sorts of things suggested to me, lyme disease, bacterial parasites, other food intolerances, yeast infections, and plenty of other stuff. No one suggested super sensitivity to me for the longest time. Meanwhile I was very sick. It was a bummer. When I finally realized what it was things improved very quickly.

I would just like people to realize that super sensitive celiacs do exist. I'd like us to be able to share with each other what things we do to be able to get healthy.

Not everything will work for everyone. Even among us, there are different degrees of sensitivity. It is just nice to be able to share and be acknowledged.

Gemini, I was just joking about the wine study. I'm glad you can drink wine. I improved when I eliminated it. I can drink certain other alcohols, and I can drink homemade grape juice. Even we super sensitives vary in our sensitivity.

I know that there are asymptomatic ceiacs with bad damage. I don't feel like I should dictate other celiacs/gluten insensitives' diets based on my own.

Gemini, there's two things you said that I'm going to quote here, but more because they seem to be fairly common sentiments towards the idea of super-sensitivity and I'd like to comment on them. Not trying to single you out otherwise.

I personally think that those who label themselves super sensitives to the point discussed here are people who have many food sensitivities and intolerances and react to many different things.

and

Alcohol is very irritating to the GI tract ... the amount of red wine I drink it would definitely trip my repeat blood work at some point and I would never be showing the consistently low, low numbers I have when tested. ... I consider that more scientific than someone saying they reacted so it must be the gluten in the wine!

These both seem to add up to a couple of common ideas about super sensitivity:

1) We don't know what we're really feeling and we've never explored intolerances/allergies and such.2) We automatically assume gluten every time we have a physical issue.

Neither of these has been true for pretty much every super-sensitive celiac that I've met. Now, sure, we've made mistakes. Everyone does. I mean, how many times has a celiac thought they were glutened and turned out to have the stomach flu? It happens, especially when all new celiacs are figuring out what our glutened symptoms are, and also deciding if we have other unrelated symptoms.

As an example, I get massive headaches from certain pesticides. I thought for the first year that gastro-symptoms were from gluten and couldn't figure out where I was getting hit with it. Nope, turns out my big D is just from food allergies. I have yet to have a gastro issue with gluten unless I'm getting low gluten levels for days in a row, and then I start getting the big C. My celiac stuff is more vertigo, mental issues, and a huge physical crash.

Lots of symptoms, and it took a long time for me to separate them out to where they belonged. I definitely didn't assume everything was gluten from the beginning. I did the opposite, like many super sensitives that I know.

I found out about my new diet, started eating it, and got a little overwhelmed at figuring it all out. Still sick on the diet, so checked out cross contamination and got new pots and pans and stopped kissing husband after he ate gluten, and so on.

STILL sick, so again, like a lot of other celiacs, started looking for other intolerances, allergies, vitamin deficiencies, ANYTHING that might explain what's going on. Found a few, eliminated them. STILL SICK. And then I was lucky enough to hear about the concept of super sensitivity to gluten.

Honestly, most of us didn't jump on the super-sensitive band wagon at day 1 of 'still sick.' We've explored other issues, other problems, and they've either been a bust or they've helped, but we still can't heal completely. And that's when, after lots of tests/trials/food journals, we might check out super sensitivity, too.

And for some people, that's still not the problem and they keep looking.

But for some of us, it is the problem, or at least it is the only problem that would completely explain our experiences. Allergies and sensitivities do not explain how my body reacts, and that's according to me and my allergist. Intolerances don't explain how my body reacts - that one's from me and my GI.

But when I started approaching my food form the perspective of eliminating the teeniest, tiniest bit of gluten, that's when I finally got better. My allergist was impressed enough with the physical change that he was taking measurements to show how much I had improved on what I'd done, and took notes on what type of foods had been a problem, and why.

Maybe, someday, I'll find something else that has contaminated nearly everything I've eaten and it's not actually gluten. Heck, maybe it's teflon (they found it in Antarctica. It could happen.). But for now, even as crazy as it seems, trace gluten cc is the sanest explanation for what happens to my body when I try to eat food.

Re: the idea that a super sensitive celiac always assumes it's gluten right off the bat, as you were mentioning with the wine? Again, it's not that way for most of us. We tend to have to be as scientific as we can be, within the limits of what today's science can detect and what we can ascertain with our senses.

If we drank a bottle of wine and had a reaction that is the same as our normal gluten reaction, a lot of us (if we weren't horrifically sick), will try the wine again with different food, the same bottle if we still have it. We'll try a different bottle of it, as well, or another variety from the same winery. We'll eat the same foods for a week to make sure we're very 'clean' on the gluten front, and then try the wine so it's the only new food we've added. We'll call up the company and find out what the gluten cc risks are. Are there any of our allergens present? Do they use any chemicals that could be an issue?

And when ALL of that is done, and we got a gluten reaction every time, and there IS an area where gluten cc could have been introduced, that's when we tend to chuck it in the 'gluten cc' pile.

Now, after we've been doing this a while, and had a gluten reaction hundreds of times, we may tend to assume gluten more rapidly, but I think that's pretty normal. Most of us are more comfortable labeling a reaction the more familiar it is; that's true no matter what one's sensitivity level.

And at this point, a lot of us who are very sensitive don't even TRY a new food unless we're doing it in a controlled way. And sometimes, the reaction is so severe you simply have to make an assumption that a particular food is bad, because you really, really need to avoid that reaction again. Sometimes, you have to guess without more testing, because your body can't take any more experimentation.

And yes, sometimes we'll comment that something 'could' be gluten on the forums, because in our experience, it's definitely one of the possibilities. That doesn't mean we are trying to say that every problem always IS gluten, anymore than mentioning allergies or Vitamin D deficiency is telling people that allergies or vitamin D MUST be their issue. It's just listing another possibility to look into.

It is true that we often can't prove a claim that we reacted to gluten, because science doesn't detect extremely low levels of gluten. It doesn't invalidate our experience any more than being unable to test for IgE invalidated someone's allergic response. And it's frustrating that we can't prove our experience to anyone. It would make it much easier if we could!

But assuming that we're jumping to wild conclusions without using any thought or consideration is incorrect. Trust me, I'd rather my issues were different. Heck, whenever I hear of something that that I've never thought of that might possibly explain it all, I check it out, because usually it would make my life easier.

I know one gal whose daughter reacts to the coconut fiber that is used to make the charcoal in their water filter and my first thought was...huh, have I checked out the water? That does touch most of my food, doesn't it? I have water with every meal...maybe I should check that out, see if there's something in it that's an issue, after all.

No matter the filtration method used, or the chemicals added, or the source, it didn't alter my reactions when I consumed food. Water issues a bust. Gluten cc in minute amounts still makes the most sense with the scientific resources available and applying the scientific method to the situation the best that I can.

2

T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

My coeliac child is only 8 so has never had wine or beer or anything else like it before in her life lol. I won't even let her drink the last of my coffee at her age let alone alcohol so I wouldn't know if it would affect her or not. I do know that it doesn't take much for her to be sick from cross contamination so I'm very careful with everything.

1

Lord please give me patience, because if you give me strength, I may just beat the living crap out of someone...

Gemini, I was just joking about the wine study. I'm glad you can drink wine. I improved when I eliminated it. I can drink certain other alcohols, and I can drink homemade grape juice. Even we super sensitives vary in our sensitivity.

I know that there are asymptomatic ceiacs with bad damage. I don't feel like I should dictate other celiacs/gluten insensitives' diets based on my own.

No one is dictating to anyone how they should follow a gluten-free diet. I am just offering a valid opinion regarding the never ending controversy over the supposed gluten content in some wines. It's like the envelope mystery...it's been long proven that envelopes pose no risk to Celiacs whatsoever...from gluten that is, but people still post they have gluten and people new to this diet still believe what they read. I am not basing anything solely on my experience only but the fact that the vast majority of Celiac organizations who make it their mission to provide accurate information to people with Celiac Disease state that wine is safe. People can and do react to many other things besides gluten...especially those with multiple food issues. We have sensitive GI tracts and will react to things the general public without Celiac never will. It's important that newly diagnosed Celiacs know this and won't avoid the red wine because they fear there may be gluten in it. Coatings on veggies do not have gluten either. The list goes on and on. I would also hope anyone having more difficulties after going gluten-free won't become focused on gluten only because then it will make figuring out what is wrong that much harder.

I would also hope anyone having more difficulties after going gluten-free won't become focused on gluten only because then it will make figuring out what is wrong that much harder.

I am aware that there are many possibilities for difficulties on a gluten free diet. Lyme disease, bacterial infection, parasites, yeast intolerance, other food intolerances, and so many more. Sensitivity to very low levels of cc is just one more. This approach has helped countless people that I personally know about. It may not be your problem. It probably isn't the problem of the vast majority of celiacs/gluten intolerants out there. It is the problem with some. It should not be discounted. This is especially true because it is very easy to try out a processed food free diet for a week or so to find out.

it does happen for sure in some batches and products but for the most part, if food were that cc'd or contaminated, the vast majority of celiacs would not be healing and get well. Don't forget....just because you have a reaction and others don't, it doesn't mean they get to eat it and you can't because you're so sensitive. I have met celiacs who have zero symptoms, other than unexplained anemia, and they had no villi left...none. So we all have to be careful of gluten ingestion the same way but we also have to learn where the real dangers lie and not become fearful of the food supply.

I haven't understood that most celiacs are healing and get well in our current understanding of the celiac disease process. I thought that most (is it all? I can't remember . . .) celiacs continue to show villi damage, even on a gluten free diet, although they are typically in improved villi condition compared to their diagnostic state. I thought we had discussed that on this board before, but is there evidence that celiacs are COMPLETELY healing on what is currently considered a "gluten free" diet?

When we first learned about my DD's condition, I was terrified when I saw the health condition of those celiacs that were diagnosed 30 years ago - they are suffering from celiac related condtions!! How could that be? Aren't they suppose to achieve healing by having adopted the gluten free diet decades ago?? I could not understand why they were suffering from the debilitating complications of those things that are considered complications of "celiac disease" when they had dutifully implemented the diet so early in their lives. Yet they are suffering from osteoporosis, kidney failure and a myriad of complications that I had orginally assumed would not be a problem with the seemingly "simple" implementation of a gluten free diet.

I read on this board for a long time, not understanding why nobody discussed the issues that we were having - gluten reactions to "gluten free" foods. I kept eliminating many foods because I simply didn't understand the potential cross contamination issues that must be considered to eradicate gluten from our food chain as much as humanely possible. And I really appreciate that I have found support and experiences here that are consistent with ours. I will add my fairly standard caveat that I try to convey here as often as possible: We are a family of celiac gened, gluten intolerants that have had substantial and permanent damage from past gluten exposure. We also suffer from wheat allergy and are far more sensitive than many standard celiacs. But I really appreciate the insight we have gained from the super sensitives that have been brave enough to share their hard to understand stories. It has helped us take tremendous strides in improving our health and well being.

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My super silly red siren is my guiding light. She has been a tremendous lesson for me in how gluten affects different people in very different ways. She is a super duper silly girl that was simply born that way. I have no idea why I am so blessed to have her guidance.

I agree with weluvgators. I don't regulary post on the super sensitive category, but I do read others stories and have got some useful information. It helped me a lot last year when I was trying to figure out why I was having reactions for 8 months. Weird thing is my gluten reaction changed also. I was faced with taking steriods at the time and I was almost in tears because I didn't want to. So what I told my doctor was that I wanted to further eliminate things from my diet including gluten free products I was using. BINGO! I ended up finding the culprit..gluten free oat contaminated gluten free products and some other things. It took three months to heal up and I am a year past that time and all better and I avoided steroids. I am fortunate enough to be sill able to consume certain brands of things that others still feel they can not.

Getting back on the subject of fruit and veggies.. even before I was celiac I always took the time to wash or at least rinse my produce even the stuff I grow myself. With the handling of produce nowadays I don't feel like getting salmonela or ecoli from it being contaminated from it or a host of other possible things aside from gluten.

DS1(age 13):
repeated negative bloodwork and negative EGD/biopsy. Started on a gluten free trial(8/2011). He has decided to stay gluten free due to all of the improvements he has experienced on the diet.

I haven't understood that most celiacs are healing and get well in our current understanding of the celiac disease process. I thought that most (is it all? I can't remember . . .) celiacs continue to show villi damage, even on a gluten free diet, although they are typically in improved villi condition compared to their diagnostic state. I thought we had discussed that on this board before, but is there evidence that celiacs are COMPLETELY healing on what is currently considered a "gluten free" diet?

If you read the book by Dr. Peter Green, especially the chapter on how the digestive process works, you will learn that the small intestine has a great back-up design in that the area's that absorb different nutrients have more than one spot where this happens. In other words, carbs, proteins, etc. are absorbed in more than one spot along the entire small intestine, which is a brilliant design when you think about it. You can suffer damage to one area and if it doesn't completely heal, then the other area picks up so you won't die of malnutrition. Personally, I don't really care if every single one of my villi grow back because I have achieved amazing health from the gluten-free diet and I was about as sick as a person can get at time of diagnosis. I no longer have vitamin or mineral deficiencies, am not anemic, my hair and nails grow at an amazing rate now, I have energy and even do an intense exercise program now I could never have done even 2 years ago. If someone is not healing after a long while, of course you have to look into the many other possible reasons for it but for the many, many Celiacs who recover really well, does it really matter if you achieve 100% recovery of your small intestine if you have achieved good health?

When we first learned about my DD's condition, I was terrified when I saw the health condition of those celiacs that were diagnosed 30 years ago - they are suffering from celiac related condtions!! How could that be? Aren't they suppose to achieve healing by having adopted the gluten free diet decades ago?? I could not understand why they were suffering from the debilitating complications of those things that are considered complications of "celiac disease" when they had dutifully implemented the diet so early in their lives. Yet they are suffering from osteoporosis, kidney failure and a myriad of complications that I had orginally assumed would not be a problem with the seemingly "simple" implementation of a gluten free diet.

There are many illnesses that will occur as you age, that are also connected to Celiac Disease, that will occur regardless of how gluten-free you are. A gluten-free diet does not guarantee a healthy life and developing these problems in no way means you are ingesting low levels of gluten. All of the ones you list will happen to many people who do not have Celiac Disease. One big factor is all the meds doctors love to put people on. They can harm bones and internal organs as badly as gluten can. Many of the asthma meds prescribed today will deplete your bones if you use them more than 3 months. If you don't weigh enough, and don't do weight bearing exercises, you're probably going to develop soft bones. Although I think most Celiacs who follow a strict gluten-free diet will fare better than a lot of people, there are no guarantees you will not get sick with these problems anyway as you age.

I read on this board for a long time, not understanding why nobody discussed the issues that we were having - gluten reactions to "gluten free" foods. I kept eliminating many foods because I simply didn't understand the potential cross contamination issues that must be considered to eradicate gluten from our food chain as much as humanely possible. And I really appreciate that I have found support and experiences here that are consistent with ours. I will add my fairly standard caveat that I try to convey here as often as possible: We are a family of celiac gened, gluten intolerants that have had substantial and permanent damage from past gluten exposure. We also suffer from wheat allergy and are far more sensitive than many standard celiacs. But I really appreciate the insight we have gained from the super sensitives that have been brave enough to share their hard to understand stories. It has helped us take tremendous strides in improving our health and well being.

I am really glad that reading this forum has helped make your recovery better and more complete. I am also in no way discounting anyone's reactions or saying that they aren't happening, which is what some people seem to be misunderstanding. For the benefit of the newly diagnosed, I just want them to understand that every time they react, it is not going to be from gluten. To figure it out, you need to keep an open mind and broaden your thinking.I do personally doubt that all the gluten-free products that are made available to Celiacs are so contaminated, especially those from dedicated facilities. Does it happen occasionally? Probably, because humans make mistakes. But if it only takes 1/4 teaspoon of crumbs to set off the autoimmune reaction in Celiacs, then anyone who eats any processed food on a regular basis will not heal or continue to have symptoms. This does not happen for the vast majority of Celiacs. I understand there will be a few people who do not fall into this category but it's not the norm. The last thing we want to do is create unnecessary fear in the newly diagnosed so they become afraid of what food to eat. There will be blips along the way (there was for me also) but for the most part, you can buy that brownie mix from the dedicated facility and not have to worry that it will make you sick or that your intestinal tract will never heal. You can also be pretty confident that you can buy veggies and fruits, wash them well and not be afraid you are consuming low levels of gluten.